IVIG - Joint Pain - Hydrocortisone

[RobertCLL]

I have written before that IVIG seems to reduce the join pain that I experience. I have been off IVIG for the last 4 months due to the pandemic and have notice an increase in the last months in the pain I experience in the shoulders, arms and legs.

I restarted my 1st IVIG infusion on Saturday, by Sunday most of my pain has gone.

As part of my infusion protocol I receive 100mg of hydrocortisone.

So my question is: is it the IVIG or the hydrocortisone that's controlling the pain. I have looked up the half life of hydrocortisone and it appears to be only a few hours.

Any thoughts?

[Newdawn Administrator]

Anecdotally I can say my severe joint pain probably was reduced whilst I was on IVIG but I wasn’t given hydrocortisone with mine.

Interestingly, I had to come off Ibrutinib after 15 months when they stopped my IVIG... the infusions ceased due to changed criteria, funding and COVID regulation reasons.

I do have existing arthritis but it did flare badly after that and has barely abated.

Sadly the link between systemic inflammation and joint pain isn’t recognised as a reason to administer immunoglobulin therapy but I’m sure many of us can attest to the connection.

Best wishes,

Newdawn

[RobertCLL in reply to Newdawn]

I am also on Ibrutinib which may contribute to the pain. Interesting that your experience is that the IVIG was controlling the pain and not hydrocortisone.

[Newdawn Administrator in reply to RobertCLL]

I’d be viewing the Ibrutinib as your possible culprit Robert. There’s a significant link between Ibrutinib and joint pain.

Newdawn

[gardening-girl]

Robert, consider this possibility: It is possible that batches of IVIG have natural antibodies to TNF-alpha or some other RA factor.

After all, adalimumab/HUMIRA is a fully human monoclonal antibody developed from screening for naturally occurring anti-tumor necrosis factor alpha (TNF-alpha) antibodies.